China Charity Federation and China Health Education Center, together with several other parties in China, have jointly launched a public welfare initiative to increase the public's awareness of rare diseases.
It is said that the month-long initiative will be presented in the form of lectures and seminars and it will be first done on the campuses of Peking University and Tsinghua University. The organizer of the initiative said that they hope to draw the public's attention to patients with rare diseases so more sustainable medical services can be offered to them.
China's Ministry of Civil Affairs said it will include patients with rare diseases into the charity aid system of China in 2010.
The World Health Organization defines rare diseases as diseases that affects 0.65 to 1 person out of every 1,000 patients. WHO states that brittle bone disease, Albinism, and Fabry disease are all examples of rare diseases.
At present, there are 5,000 to 6,000 confirmed rare diseases, about 80% of which are genetic in origin, and only about 1% of these can be treated with the medicines currently available. Based on the WHO estimates, China currently has more than 10 million people suffering from rare diseases.
